A Week in the Life of Cyrus Lee

The Sun King on his throne!

Cyrus and I got to spend a lot of time together this week as I took on Kyle's routine and errands. This was a double win as it let me spend more time with Cyrus and let him spend more time on his passion project. I spend a lot of time wondering what goes on in his little head - what he makes of us, of the world around him. And this account of our week together explores that idea from his perspective rather than mine. It was an interesting exercise from a writer's perspective.

All names of children have been changed to protect their privacy on my very public blog, and for this same reason their faces are not shown even though they are all preciously adorable. This post pulls no punches. It shows the progress, the fun, the scary, and the ugly bits of Cyrus's daily existence with lots of pictures and a few videos that will definitely show up if you're using Chrome (I make no other promises for other browsers as I've had trouble with it). We hope you enjoy it!

Saturday
I have a best friend and I will call her Heather. She is in my preschool class and she makes me smile. Today, I was supposed to go to her birthday party at the Magical Bridge Park, but it was raining again! I say again because this is the second attempt at having a party and it was raining during the first one too!

I suppose it was just as well, as I wasn't in the best of moods for most of the day anyway.

Sometimes, doing nothing is best...

Sunday
Today, I got to actually go to a birthday party! This one was for Lily! Lily has come over to play a few times and she's fun to watch run around. She turned two, so she's the same age as me! When we arrived we didn't get out my wheelchair. Instead, mommy carried me in! I ride outward so I can see the world. And sometimes she stomps while making funny noises. This often makes me laugh. It's definitely my favorite way to travel!

There were so many children at the party! Lily has so many friends! I was honestly a bit overwhelmed at first and mostly stayed in the front room where there were less people, but Lily still came and sat with me for a bit. She even lent me her colorful quilt with different textures and animals so I could roll around on the floor.

The theme of the party was kitty cats! 

My favorite part of the party was when we sat in a circle and sang songs! I knew many of the songs from class, but there were new ones to learn and enjoy. Everyone singing and swaying made me smile.

And then we sang happy birthday! I have heard the song happy birthday before. I just had my own birthday party a few months ago after all, but do you know how cool it sounds when like thirty people are singing it? It was amazing!

Anyway, after the party, I went home and took a really long nap.

Had too much fun today!

Monday
On Mondays I go to Occupational Therapy with Joyce. She works with me mostly on feeding and how to use my hands. Today, we worked on holding on to the ropes of a swing. I've gotten much better about keeping my grip and pulling on the ropes anytime I lose my balance and start to lean or fall in a certain direction. My ability to keep my head up is starting to come back too.

Gotta hold on!

Then we raced toy cars on tracks to see which car would go the fastest down a spiraling ramp. I was in charge of starting the races by pulling down on a lever. The green slug bug always won no matter which other cars we raced it against.

The last exercise was to fish out strands of Mardi Gras beads from a bucket of rice. We tried putting both my hands and feet in the rice, but it was too much for me. I didn't like so many sensations at once. I ended up just holding onto the beads really tightly while Joyce pulled them through my hands.

After we got home, I had to go get some lab work done. About a month ago I was diagnosed with a pretty severe vitamin D deficiency. And since then I've been taking supplements. So today's lab visit was a follow up to make sure my levels have gone back up. My doctor figured that since I had to go to the lab anyway, she would check other vitamins too. The only problem was that she ordered more tests than can be done on me at one time because I'm only 29 pounds. In fact, the tests have to be split up across three different trips. This was the second one.

But the weather was so nice and the lab was actually not at all far away, so we walked. I even liked being outside! I'm often pretty photosensitive and I can't stand to wear sunglasses. I have learned to just shake my head back and forth until they fall off. But today it was just warm enough and there was a nice breeze and mommy likes to drive the wheelchair like it's a carnival ride so I was having fun on the way!

The actual lab work wasn't that bad either. I squirm a lot, but I don't actually mind the rubber band around my arm or the prick of the needle. I just don't like to hold still! But I didn't cry or fuss at all.

Then we got to walk back home, which wasn't as much fun as the way there as the sun was in my eyes this time, but that's okay.

Tuesday
Tuesdays and Thursdays are my favorite days of the week as I get to go to preschool! At school we spend fifty minutes in the motor room working on motor skills followed by another fifty minutes of circle time where we learn how to socialize and communicate. I was so excited that I woke up an hour early!

Nicole is my teacher and she is the best person in the world at understanding me. I mean, mommy and daddy have learned what I like and dislike, and they are pretty good at guessing what is going on most of the time, but Nicole asks what I want and even waits for me to answer. She knows that I need like 30 seconds of processing time just to understand the question. Then I need more time to figure out how to move my arms and head the way I want them to go to answer.

Nicole is the best!

She does this by showing me pictures. She started last week with a blank white piece of paper and a picture of some lines. I didn't look at the white paper for very long. I mean, who would? There's nothing there! Boring! The lines were a bit more interesting. But just a bit! So then she took the blank paper away and put up a picture of a face. The face was clearly more interesting than just a series of lines. The lines didn't even look like anything.

And finally, she started showing me pictures of activities that we do in the motor room. She put a picture of the swing beside a picture of the ball pit. She then told me to tell her what I wanted with my eyes. That takes awhile, but Nicole knows that so she will wait. I chose to swing on the swings. I choose the swings every week! They are the best, you get to get thrown around and the swing doesn't complain that it's tired or sore and you get to swing with a friend!

Except today my classmates were all late, and I was all by myself. Well, Cho was there! She's in physical therapy at the same time I'm in class, so we often share the motor room together. She was actually really interested in what I was doing on the swing and came over all by herself, though Vicky - her physical therapist - was ready to catch her if she started to fall. She came over and started to help push me so I could go higher. I love going higher and faster! She smiled and pat me on my tummy. She kept pushing me until I accidentally hit her with my flailing arms. I didn't mean to, but they are hard to control.

Then she was upset so Vicky distracted her by taking her up to the top of the slide. When at the top she likes to wave at us on the ground. When we wave back she gets excited and claps.

Then we moved on to the ball pit. It's not my favorite, but I'm getting better at getting the balls off my face by moving my head back and forth until they all slide away. And I do get to spend more time with Nicole while in the pit.

Once we're done in the motor room we have to go to our classroom, which is on the opposite side of the school. We do this in style by racing up and down the hallways on wheels! I used to ride in a laundry basket that was sitting on a rolling board, but in the last few months I've outgrown the laundry basket and have graduated to a scooter board! I tried riding it on my tummy today and I loved it! Nicole, though was worried that I would just roll right off it without a seatbelt or anything. This is probably my second favorite way to travel!

Scoot board races!

Then it was circle time, which was made better because two of my friends arrived: Heather and Laura. We always start by taking attendance, which we do in song! Nicole will ask who's at school today then hold up a picture of one of us and we have to tell her who it is. I do this by pushing a big yellow button that will play my name if I push it. I've gotten a lot better at pushing the button at the right time. Like I wait for her to ask the question before I push it. And when it's my picture, I have to help put my picture on the board by pressing it up against a velcro wall. I've gotten better at getting my hands in the right place to do this.

After introductions we sing three songs. Our songs stay the same for a month and then we get new songs! This month we have Twinkle Twinkle Little Star and Mr Sun, Please Shine Down on Me. Both of these songs have hand motions that go with them that I don't really have down at all, but I like to flail and kick with my legs. For the third song, The Little Teapot, we get out of our seats so we can dance with the whole body. I didn't like this one as much because I get tipped over sideways when it's time to pour out the tea and I had to learn to put my arm down to support myself. I am getting better at that too, but I didn't like it today and started crying. Mommy had to comfort me before I could go to snack time.

The last part of Circle Time is a fun activity before we sing good bye. This time they brought in giant exercise balls. We sat on top of them and bounced or leaned on them to put weight on our arms and legs. It seemed a lot like physical therapy, which made it less fun. I sighed a lot. Usually the ending activity is way more fun. Sometimes we get swung around in blankets or we play with bubbles. Laura loves bubbles.

How is this exercise?!

Shortly after we got home, I felt a seizure coming on. I don't know how to describe exactly what it feels like, but it scares me. My head and eyes dart every which way trying to find comfort, my arms and legs flail, and I feel like I can't breathe. But nothing calms me down. Then everything went black. When I woke up six minutes later, I felt so tired, dizzy, and sore. My seizures have been getting worse lately. I've had three really bad seizures in the last two weeks or so, and this one was the same. I had to get the emergency medicine. I can tell because it makes me feel weird and definitely sleepy.
I tried to sleep it off before Linda arrived.

Recovering from a seizure

Linda is my Early Interventionist (EI) and she visits me once a week at home to help me with my overall progress. Generally, she works with me on my visual coordination. She's also really patient, and is able to discover that I can do things before almost anyone else because she watches me so closely and gives me only the barest and minimal amount of aid. Today, she worked with me in the stander and with a flashing wand to practice visual tracking. I was slower than I usually am because I was still feeling a bit loopy, but I tried hard. And she understood.

Wednesday
Wednesdays are supposed to be my day off,  but mom wanted us to go to the Magical Bridge Park since we didn't get to go on Saturday. Magical Bridge Park is an inclusive park that has some really neat things for people like me that have trouble getting and moving around. The merry-go-round is flush with the ground and you can roll your wheelchair right onto it. Their slides and playhouses are all wheelchair accessible too! And their swings completely enclose you, though they don't have quite enough head support for me.

It really was not the best day for me though. We arrived right when I was hungry and it was so windy and also so bright! I'm really photosensitive and can get a bit overstimulated. And there were so many children there even at 1 o'clock in the afternoon running back and forth. I guess they were on spring break like my mom. But we got to learn everything the park had to offer and if we go again on a morning when there's less people and maybe I can be convinced to give sunglasses another chance, I would probably like it. At least the merry go round because if there's one thing I like, it's spinning in a circle really fast!

Back at home I spent part of the afternoon in the stander and daddy made it more interesting by putting the yellow switch we use in class on my tray. Mommy changed the recording to a song we sing in class too. I am getting better at keeping my head up and I am getting more precise with the button. I was able to push it with only one finger!

Here's a video:

Wednesday is also bath day. I hate baths especially since I outgrew my toddler bath insert, and now have to use the bath chair. The bathchair is a blue waterproof mesh chair that has straps and indents to help me sit the right way. It also imprints little bumps on my legs and my back. And we recently installed a removable shower head. It's the worst! There's so much spray - I try so hard to get away from it completely. I guess I don't hate baths - I hate showers! But we don't have the equipment for me to take baths anymore. But that won't stop me from fighting tooth and nail to not take showers!

Thursday
I woke up excited today as well! I had trouble eating breakfast though so we were running about ten minutes late. This ended up working out as Heather and I got there at the same time! We got to smile at each other in the waiting room before heading to the motor room together. Lupita was there today and the three of us rolled around on a tilted platform saying hello to each other. We then bounced on tires before heading to the swing. I got to swing with Heather, which is something that always makes me smile. But the swing only fits two people so we had to take turns. Mommy kept me pretty occupied though when I had to wait.

Nicole wouldn't let me ride the scooter board on my tummy today. I had to ride on my back today, which she says is safer, but I don't think it's as much fun. You can't see where you're going!

This is safer... and therefore, not as much fun.

During circle time, my teeth really started bothering me. My last set of baby molars are coming in and they are taking forever! In class, I remained unsmiling, sharing only occasional winces, and refused to participate by pushing signs or buttons even when it was my turn. Even the songs and dancing weren't enough to grab my interest. Until the Little Teapot. Then suddenly, the movement I hated on Tuesday, was enough to distract me from my pain and I really liked it today!

This is a wince... not a smile. Though many mistake the two.

For snack time we had Cheerios, veggie sticks, and apple sauce. I mostly just played with the pieces by swirling them around in the sauce as I cannot eat solids yet. I did have a fruit puree though, which I thought was good!

To play or to eat? That is the question!

They brought the exercise balls out again, and like the Teapot song, I really liked it today and had lots of fun bouncing up and down with Nicole! Usually I get stressed the first time I try anything. But when it's more familiar, and I know what to expect I enjoy it more. I guess that just means you should be willing to try things twice!

Okay, this can be fun. 

I went home and rested a bit, but then I had another seizure right before my afternoon dose of medicine. I guess the one advantage to having panic attacks is that mommy knows that a seizure is coming and is right next to me holding my hand before it strikes. This seizure started like a normal one, but then it got strange. Because on the left side of my body I came out of it very quickly, but my right side kept twitching. It only lasted four minutes though and I held mommy's hand in a death grip through the whole things my left hand definitely still worked. After the seizure my right side was completely limp. I used to have partial seizures like this quite often, but it's been a long time. I was glad to come out of it on my own and was quick to smile. But it feels weird when you're smiling with only half your mouth.

I took a long four hour nap after that, and didn't have lunch until six in the evening. But the rest of the day was so fun! I had so much energy from my rest and mommy and daddy both played with me, which always makes me laugh. Stayed up really late and didn't have dinner until ten. I wasn't tired anyway.

Sleeping off a seizure

Friday
I woke up way too early this morning, but could not go back to sleep even with the comfort of a pacifier. But I didn't want to be awake and made that clear anytime anyone moved me or changed my diaper or anything. But after some breakfast the day was looking much better.

On Fridays I have physical therapy. My physical therapist is Lisa, though Joyce usually comes too and they co-treat me together. Today, Joyce wanted to start by readjusting my wheelchair because I've been growing too fast and it's more snug than is comfortable. But this meant I had to sit in it for that much longer! So many reasons to sigh.

We worked on the swing again today. My grip was especially tight and they had a hard time getting me to let go when it was time to do something else.

Lisa worked with me on a side sit where I have to put some weight down on my side or elbow, not unlike the Little Teapot dance. I wasn't in the best mood though and fussed a lot, and just in general struggled to get away. Lisa is nice though, she'll let me take breaks if it gets to be too hard.

When we came home though and had lunch, I was really active again. Daddy was playing Persona 5, which has really good dance music, so I had a Persona Dance Party on the floor. No one could keep me still. I was having too much fun.

Persona Dance Party:

During dinner time, I felt a seizure coming, but it came too fast. None of us were ready yet. This is the first time I have ever had a seizure while I was eating. This is scary because when you're seizing your gag reflex doesn't necessarily work and if there's food in your mouth or throat your body doesn't work to clear it so you can breathe. But luckily my dad noticed my face turning white and my lips starting to become just slightly blue, right away. We moved to the floor and I was placed on my left side - Mommy had the oxygen ready, but we didn't need it. Before they could do anything more, I had come out of the seizure and started to clear my airway myself! The seizure was less than a minute, suggesting that my medicine changes are helping.

After that I had no objection to going to bed early. I had woken up too soon anyway.

Saturday
Today was a lazy day. We did have to make a trip to Target. I spent most of the time looking at the ceiling lights. They have so many lights!

But the rest of the day was pretty relaxing. I watched mommy and daddy play a lot of games. They played with me by swinging me up, down, and around. I love that.

I took two naps and had no seizures. (It's okay to be jealous of me).

Then I spent the evening cracking myself up for about an hour about things you just cannot understand. At least not yet. But maybe someday. Maybe someday.

It may be upside down at times because mommy was distracted by my cuteness:

Thank you for sharing my week with me. I hope you enjoyed the journey and had a good week too!